Things Left Unsaid

There are a lot of things left unsaid for patients living with Inflammatory Bowel Disease.

From things our doctor’s didn’t mention when we were diagnosed, (that they probably should have). To the things we ourselves withhold from the world. At times I ask myself, “was it worth it?” Was withholding information about my symptoms for so long, worth the pain I have to endure now? Was hiding my pain from past partners worth the agony I went through behind closed doors? If I were honest with myself and others at all times, would people still accept me for who I am? I’d like to think they would. I’d like to think the people around me support me no matter what the issue or circumstance. I’d like to believe that IBD doesn’t change who I am, but if I said that’s what I truly believed I’d be lying.

Over the years I have begun to have more open and honest conversations with my doctor.

He doesn’t get the sugar coated version anymore. But to have these same conversations with friends and family? Well, that would be unimaginable. To my family I want to be their sister, daughter, niece. To my friends I want to be a support system. To my partner I’d like to be strong and attractive. I don’t want to be seen as the patient. It’s not wrong to ask for help. I do from time to time. It’s not hard for me to talk about my diagnosis either. I do this a lot. It’s also not difficult for me to express what I’m going through to the general public through my advocacy and online work.I actually enjoy this. When I was diagnosed I didn’t know anyone with my condition, so having the opportunity to eliminate that issue for patients newly diagnosed and/or new to the online community makes me really feel as if I am making a difference.

What is hard is doing that same thing with the people closest to me.

Even though I know I’m not, I hate feeling like a burden. I hate burdening people with my issues and most of all I hate for people to look at me differently because of them. Everyone always says they “won’t judge you,” but with certain things judgement isn’t intentional and certainly isn’t always negative. People can pass judgement and start treating you differently without even knowing it. And that’s one of my worst fears.

So as much as I can tell my doctor and as much as I love to share online, for now the depth of my IBD struggles will remain a mystery to certain people in my life. Maybe someday I’ll start to share more, or maybe they’ll find it online. But for now, I think I’m okay with sharing however much I’m comfortable with sharing at the time. There’s no need for me to drown people in the details. I’m honest and for now if they ask for more, maybe I’ll share a little deeper too.

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Comments

I know when I was first diagnosed, I actually kept quiet about my diagnosis for years. Only close family knew. But it wasn’t until years of dealing with it, that I found, for me at least, that being more open was quite therapeutic and freeing.

However, it is so important to know that the amount you want to share with others is completely up to you. Go at your own pace. And share what you feel comfortable sharing.